Why the Patient Voice is Essential to the President’s New Global Commitment to End Cervical Cancer

By Tamika Felder, Founder and Chief Visionary, Cervivor, Inc.

In case you missed the big news, President Biden hosted leaders from Australia, Japan, and India at his Delaware home this past weekend for the latest Quad Summit. Why is this big news? The gathering of these four key countries, one of several since 2020, marks a milestone in the fight to end cervical cancer worldwide.

As reported, the Summit launched the Quad Cancer Moonshot Initiative, aiming to significantly reduce cervical cancer rates in the Indo-Pacific region, which includes South Asia, Southeast Asia, and parts of Oceania, and accounts for one-quarter of global cervical cancer cases. Alongside the U.S., the other Quad countries are making huge commitments to medical equipment, HPV testing, and vaccines.

We can all learn a lot from Australia, which is setting the pace globally. The country is on track to become the first to eliminate cervical cancer, defined by the World Health Organization (WHO) as having fewer than four cases per 100,000 people. The WHO has also set a global deadline of 2030 to get rid of this disease for good. Other countries are closing in on the target including Sweden, Portugal, and Rwanda.

But here’s the thing: While these international efforts can be game-changers, they can’t achieve their goal without one crucial element – the voices of cervical cancer patients and survivors. That’s where Cervivor comes in.

Cervivor’s global community of cervical cancer patient advocates is growing and getting louder every day.

Why Patient Voices Matter

Cervivor has always focused on amplifying the voices of those directly affected by cervical cancer from way back when I founded the organization in 2005 after I survived cervical cancer in my twenties. Sure, I was grateful to be alive – minus my uterus and facing long-lasting health complications – but I was angry. There was an HPV test and there was about to be an FDA-approved vaccine, but no one was talking about how cervical cancer is almost entirely preventable. What happened to me shouldn’t have happened to anyone else, especially the nearly 350,000 women it continues to kill worldwide each year. 

When Dr. Linda Eckert, one of our 2024 Cervivor Champion Award winners and a global expert in cervical cancer prevention, released her book Enough: Because We Can Stop Cervical Cancer this January (during Cervical Cancer Awareness Month, of course), she made sure to include stories from our Cervivor community members. Why? Because our voices are crucial in every initiative aimed at ending this disease. By sharing our lived experiences, we can influence everything from drug trials to legislation to, yes, international collaborations. These authentic, often raw, stories remind the world that cervical cancer isn’t just a statistic – it impacts real women and families.

In this video, cervical cancer expert Dr. Linda Eckert shares why she wrote Enough and how inspired she was by the dozens of survivors whose stories it features, including members of our Cervivor community.

Australian Prime Minister Anthony Albanese shared a similar sentiment with the announcement of the Quad initiative, calling attention to the women in the Pacific who die of the disease at up to 13 times the rate of women in Australia. “These people are not numbers,” he said. “They are our neighbors, members of our Pacific family, and we’re stepping forward to help.” 

Cervivor: Leading the Charge

From our annual Cervivor School, which empowers survivors to become advocates, to our upcoming Cervical Cancer Summit (sign up for updates!), Cervivor is at the forefront of the fight against cervical cancer. We partner with healthcare providers and organizations to improve access to care and lead awareness campaigns like #Screen4Me. We also advocate for critical legislation, such as the PREVENT HPV Cancers Act of 2021 and its expansion in 2023. Our efforts extend to high-level forums, where we drive discussions to ensure cervical cancer prevention and care remain a priority.

Like President Biden’s reported belief in a “latticework approach” to diplomacy, Cervivor fosters collaboration. By working with healthcare professionals, researchers, and other advocacy groups, we create a united front against cervical cancer. Our community members serve on guideline panels, advisory boards, and in research studies. This year, I was honored to be appointed to the National Cancer Advisory Board by President Biden, a role that allows me to continue championing the voice of survivors at the highest levels. Their perspectives are essential to shaping policies, informing research, and pushing for a future where cervical cancer is no longer a threat.

Cervivor Founder Tamika Felder moderates the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.
That’s me on the left moderating the 2024 Cervical Cancer Forum at the White House as part of the Biden Cancer Moonshot Initiative.

When I had the privilege of moderating the Cervical Cancer Forum at the White House earlier this year, I called it a historic moment – researchers, policymakers, community workers, healthcare providers, patients, and survivors came together with national leaders to elevate the patient voice. With the latest Quad Cancer Moonshot Initiative, it’s even more crucial that we raise awareness globally.

Now is the Time to Join Us

Never before has cervical cancer been so at the forefront of the world stage. Now is the time for all of us to unite in the fight to eliminate it. Together, we can do this – it is not just possible; it’s necessary. Too many lives are being lost to cervical cancer worldwide. This is a human issue that affects us all.

This graphic of people we have lost in our Cervivor community represents only a fraction of the women still dying from this preventable disease.

Cervivor serves as a megaphone for the patient and survivor voice, but we need your help to amplify the message that this cancer can be prevented if we use the medical knowledge and tools at our disposal. We have to reach that mom or sister who hasn’t gotten screened lately because she’s “too busy” but is noticing “weird” symptoms down there. We have to let parents know that their kids may never have to go through cervical cancer treatment (which isn’t pretty, I can tell you) if they get vaccinated now. For that matter, the American Society of Clinical Oncology (ASCO) announced in May that the HPV vaccine has been linked to a decrease in HPV-related head and neck cancer in men, and that people who are vaccinated are less likely to require certain surgical cancer treatments. Truly, getting your kids vaccinated is giving them the gift of a healthier future. 

This screenshot of a Facebook post shows global cancer advocate Tamika Felder addressing a group at the White House for a Biden Cancer Moonshot event on October 24, 2024, where First Lady Dr. Jill Biden tagged and personally thanked her.
While I don’t do what I do for recognition, getting a thank-you on Facebook from First Lady Dr. Jill Biden a couple of years ago was pretty gratifying.

As distinguished professor Dr. Noel Brewer of the UNC Gillings School of Global Public Health – an HPV expert and trusted ally in our mission – has emphasized, “In reality, data and statistics may only hold sway on the pages of medical journals. What truly matters are the people and their lived experiences. Sharing powerful stories cuts through the noise and connects us to what is vital.” He likens explaining data without the patient experience to “walking into a firefight armed only with a calculator.”

At Cervivor, we are armed with hundreds of powerful stories – too many stories, to be honest. I implore you to join our fight to end this disease now, not later. Who’s with me?

Tamika Felder is a cervical cancer survivor and the Founder and Chief Visionary of Cervivor, Inc., a nonprofit dedicated to cervical cancer awareness and prevention through its global community of patient advocates. Driven to eradicate cervical cancer within her lifetime, she is a leading voice in healthcare, HPV education, and cancer prevention.

Tamika has shared her story at Presidential Panels, trained thousands of patient advocates, and serves on the steering committees of the National Cervical Cancer Roundtable and the National HPV Vaccination Roundtable. Recently appointed by President Biden, she is now a member of the National Cancer Advisory Board. Tamika’s impactful storytelling has also been featured on Bravo’s Real Housewives of Beverly Hills and in the documentaries Someone You Love: The HPV Epidemic and Conquering Cervical Cancer.

Teal Blue Japan: An Interview with Michiyo Namba

May is Asian American Pacific Islander Month! As we continue to celebrate, check out this interview between Cervivor Ambassador and Cervivor Japan Liaison, Anna Ogo, and Ms. Michiyo Namba from Japan. Anna met Michiyo through Tamika Felder, Founder & Chief Visionary of Cervivor during Cervivor School Nashville. In this article, Michiyo shares her story with cervical cancer and the challenges the Japanese community face with this disease. 

Anna: Can you start by telling us a little more about yourself?

Michiyo: My name is Michiyo Namba, President of Think Pearl. I started my own PR and event casting company for women when I was 29 years old, got married at 31, and had a baby at 33. In 2009, I was diagnosed with cervical cancer at 36 years old. I wish I had known more about cervical cancer, vaccines, and screening before I got cancer; and this was my reason I started an organization called Think Pearl. That was right before my hysterectomy surgery in December of the same year, 14 years ago. Our mission is to make everyone healthier and happier both physically and mentally, through our education and advocacy on cancer prevention and women’s health including cervical cancer awareness.

Anna: Tell me about your cancer journey in Japan. How does your story begin? How did you feel about your diagnosis?

Michiyo: In the summer of 2009, I had a routine pap test, which came out abnormal. I had no symptoms at that time. In January 2010, I underwent a radical hysterectomy, and it was confirmed that I had stage 1A1 cervical cancer. I had the option of preserving my uterus, but I chose to have a hysterectomy because of the size of my tumor. I immediately thought “Cancer = death” as I didn’t have any knowledge about it. I asked a friend of mine, who was a gynecologist, for explanations about my diagnosis, which helped to sort out my feelings. As I researched cervical cancer more, I learned that this disease was not uncommon, and it didn’t make sense to me that  I had never heard of this disease before.

Anna: How did you share the news with your family and friends? What was their response and what kind of support did you have?

Michiyo: I informed my family and friends after I had come to terms with the situation. It was reassuring to hear that they would support me no matter what happened during treatment, as long as my life was not in danger. The doctor had told me that I could continue with my usual routine until the surgery, which made me feel conflicted. However, my family and friends were there for me as usual, and their constant presence made it easier for me to share my troubles without feeling like a burden.

Anna: Can you share with us about your treatment? What were the most difficult things? How are you doing now? Has your life changed after treatment?

Michiyo: I underwent a radical hysterectomy and was hospitalized for three weeks (which is longer than the current average for this procedure at the time of my surgery in 2009). I did not undergo any other treatments, such as chemotherapy or radiation. Realizing that people can die young and unexpectedly and that the risk of death can be so close, was the most difficult and challenging aspect for me. It has been about 14 years since my surgery, and I am in remission. There were not many physical changes in my daily life. However, my perspective on life has changed as I feel like I have been given a second chance, and I want to contribute to society in any way I can.

Anna: Let’s talk about the Teal Blue Japan project. What was your inspiration for the project?

Michiyo: In 2020, the World Health Organization (WHO) announced a global strategy to eliminate cervical cancer and an event was held on November 17 each year to light up landmarks around the world in the teal blue color associated with cervical cancer elimination efforts. The event was organized by WHO, and it was first held in Kyoto in 2020. In 2021, the Teal Blue Japan campaign was launched nationwide to promote cervical cancer screening and to improve understanding of the proper knowledge about the HPV vaccine in cooperation with local communities. The campaign is hosted by Think Pearl, but doctors and physicians across Japan are actively working on educating and raising awareness in their respective communities. The success of the campaign is due to the support and contributions of like-minded individuals who believe that doing good for society is important, rather than just the know-how of organizing campaigns, which is the core business of Think Pearl.

Anna: What challenges do you see regarding cervical cancer in Japan? What would you like to see for the future of cervical cancer in Japan?

Michiyo: In order to make impactful communication, I believe that all stakeholders, including the government, education, healthcare, and media, need to work together. While each is working to improve the situation in their own position, it seems that information has not yet reached people all over Japan. Everyone has knowledge about cervical cancer and its risks, and everyone is properly informed about the choice of getting vaccinated against HPV.

Anna: Looking back at your cancer journey, what are some of the cultural obstacles you had to overcome? What advice do you have for other women diagnosed with cancer in Japan?

Michiyo: Since the primary cause of cervical cancer is the HPV infection and that is related to sex, I think that stigma towards sex are similarly present in many cultures and maybe cannot be erased. However, in Japan, we have various projects in progress to promote cervical cancer prevention, early detection, and so on, and to implement those systems into society and educational systems. I believe that if we continue to progress in this direction, we can definitely overcome these barriers. In Japan, there are many fellow cancer survivors around you, even if you don’t know it. I think there may be times during treatment when it is very difficult and you feel hopeless. However, I hope you won’t hesitate to rely on those around you and ask for help. Japan has some of the world’s best treatment options available. Trust in reliable medical professionals, take your time and try to find happiness in even the smallest things every day.

Cervivor would like to extend our deepest gratitude to Michiyo for sharing her cervical cancer journey from patient to advocate with us and to Anna for her dedication to bringing more awareness globally to cervical cancer awareness and prevention.